Wednesday, October 26, 2011

What's in a name? Why people with mental illnesses deserve to be told they have the illness (what a concept!).

I had an annoying experience in a class today, and I think some of you readers will understand why. I was listening to a speaker in a social work course, who is a mental health counselor, discussing her job. She was talking about patients (er, consumers!), who have Borderline Personality Disorder. She was saying how a lot of therapists do not want to work with people who have this disorder. And then she said the following: "One thing you should NEVER do, is to TELL a person with Borderline Personality Disorder that they have that disorder! Remember never to do that! Because if you do that, the first thing they will do is go on the internet, and look up Borderline Personality Disorder, and then start acting out the things they read about that are symptoms of that disorder, which is dangerous because the symptoms are things like cutting and trying to kill yourself."

She said this. I thought to myself, "What?". I actually expected the professor to disagree with what she had said, but that did not happen. Now, I have some people who read this blog, and whose blogs I've read, who have diagnosed Borderline Personality Disorder, and who write about how they are dealing with it. The one blog in particular I am thinking of is written by a very strong person dedicated to getting better. If such people do not even f'ing know that they have the disorder, because their therapists and psychiatrists purposely HIDE that from them, then how the heck are they ever supposed to get any better?? And while I'm at it, I think there were people who cut and attempted suicide well before the existence of the internet, which we all know was only invented by Al Gore (yes, I am joking here) a few years ago.

So this brings me to an important point. Knowledge is, indeed, power. And having a name for your disorder matters. A lot. I know this because I spent seven years of my life living through psychosis without knowing at all that I was psychotic. I was never told. If I was told, I have no memory of it. I know that for the majority of those years, the reason I was never told during any of my hospital stays that I was psychotic was probably that nobody had figured it out. But during some of my hospital stays, when I was clearly, obviously very psychotic, there is no way in hell that they didn't figure it out. I recall very clearly screaming out loud to the voices I heard at the top of my lungs and hospital staff trying to calm me down, as I laid in a bed, kicking and screaming, "I AM NOT A PUPPET!!! I WILL NOT DO WHAT YOU SAY!!!". I do not recall anybody ever saying to me, "You are hearing voices right now." I do not recall them ever saying, "You are psychotic". I do not recall them ever saying, "We think you have Schizophrenia or Schizoaffective Disorder." Not until 2005.

Let me tell you what happened when they finally did tell me this, in 2005. It changed my entire existence. It gave me the knowledge that there was an actual name for what was so obviously wrong with my brain. It gave me the knowledge that I had a very legitimate disease, and that it was caused by brain chemicals. It gave me the knowledge that I was not just some crazy lunatic who was a lost cause. It gave me the knowledge that treatment was available, and that I could, in fact, get better.

There is a lot of power in a name. The first name that was close to being accurate for me was Paranoid Schizophrenia. I was told that I had that disorder in 2005. I was told this after I almost shot myself with a gun that I bought for the purpose of shooting myself. I was very, very, very psychotic at that time. I had been to this same hospital multiple times within the two years prior to being told I had Paranoid Schizophrenia. When I was told that I had this disorder, the doctor said, "I have met a man named John Nash. You remind me of him. I want you to watch this movie called A Beautiful Mind." Mind you, that was after I had already wrote on this very blog using the pseudonym "beautiful mind, complex life", because some part of me already identified with that man in that movie. I am not a genius. I will never have a Nobel Prize. But I do have something in common with John Nash, in that I walked around psychotic for years. I thought the CIA was after me, and I thought that I was a secret agent for the CIA too. I thought I was a Manchurian Candidate and had an implant inside my body. I believed these things for years. Yet, it took almost shooting myself in the head before anybody figured out what was going on and decided to share that information with me.

In that hospital, one of the patients was discharged, and she came back bearing gifts for me and some of the other inmates. One of my gifts was the book Surviving Schizophrenia, by Dr. E. Fuller Torrey. It wasn't like I could read that whole book from front to back, but I read as much as I could and I learned for the first time about this disease. I understood when I read those words: this is what is wrong with me. It has a name. Other people have it too. There are medications to treat it. I am not a lost cause.

Later, my diagnosis was changed to Schizoaffective Disorder, but since I strongly identify with the Schizophrenia symptoms (which are a part of Schizoaffective), I kept using the term Schizophrenia when I wrote on this blog for a few years, before I changed the name of the blog to indicate I had Schizoaffective Disorder. But the point of this is, I had to have the knowledge that there was a legitimate cause for my bizarre experiences in this world, and that the cause was not that I was Jesus Christ, or that I was Anne Frank, or that Armageddon was coming, or that I was a robot, or that I was L. Ron Hubbard (all of these being things I believed at various times). The cause was that I had a disease of the brain. With a name. And a doctor told me the name.

If nobody had ever told me that fact, do you know where I'd be right now? I'll tell you where I'd be: dead. Very definitely dead. I would never have managed to stay on medication if I had no idea that I actually needed the medication or any reason to believe that the medication could help me, which I would not have had if I had not known the name of the disease. I would have never gotten hopeful that I could improve, and that the medication could make me improve, if nobody had ever explained why. I would have never taken the medication, if nobody had ever had enough faith in my cognitive capacity to understand basic knowledge and logical facts, despite being floridly psychotic at the time, enough to tell me that there was a disease happening in my head, or enough respect for me to take the time to explain that disease.

A doctor told me the name. He told me to watch the movie. My mom brought A Beautiful Mind to the hospital, and I watched it. And I understood. This is what is going on with me, I thought. Yes, this is it. It is not that John Nash and I are both CIA operatives. It is that we both have a disease. And somebody brought me a book, and I read it, and I understood. There are other people with this disease. There are treatments for this disease. This disease is not a death sentence. I do not have to die. I can live now.

So, what's in a name? Life. Life is in a name. I firmly believe that anybody who is suffering from any kind of disease has every right to know the name of that disease, and to be educated on it, and to understand it. I firmly believe, also, that you cannot get better from something that you do not know even exists in the first place. I also believe, that I have gotten very much better indeed from the horrible, completely psychotic state I was in, back in 2005. The reason that happened is not just some miracle or coincidence. The reason that happened is that I knew what was wrong, and I knew what had to be done about it. I was then able to do what had to be done, which means things like going to see a psychiatrist regularly, keeping in touch with a case manager, visiting my pals at Walgreens pretty much every week for my prescription pick-ups, swallowing countless pills, going to the mental health center for injections every two weeks, and spending four years in therapy. If I hadn't done those things, like I said, I would not be here right now. Doing those things allowed me to also do the other things that have greatly improved my life, such as working a job consistently for years, going back to college and remaining there for years, socializing within activist groups, trying to keep my apartment clean (though this lapses at times), having a few friends or at least people who are close to being friends, and having a decent relationship with some of my family. I couldn't have happiness, or feel like I had improved, without having those aspects of my life. Also, I have had a roof over my head consistently for six years.

Before I knew I was sick with psychosis, I was misdiagnosed terribly with things like Bipolar Disorder and, worse, Dissociative Disorder(s), and PTSD, and even, by one idiotic doctor, Borderline Personality Disorder (he didn't know I thought I was a CIA agent, but he did know I cut myself, plus he was an idiot). I was in and out of hospitals. I lived in three homeless shelters in three different states and all sorts of other, very brief, substandard living situations. I had no money, no job, no ability to get a job or go to college, no friends except online, and no future. I constantly contemplated suicide much of the time. It is very bizarre, actually, that I didn't kill myself, but it wasn't for lack of trying. I tried numerous times. So that is where I was when I was not properly diagnosed, or, if I was ever properly diagnosed, was not told my actual diagnosis. And I have to believe that by the time I was talking about going to a concentration camp and screaming out loud to voices I heard, that somebody figured out I was psychotic in one of those hospitals. Which means that somebody knew, and never told me.

Seven years is a long time to be psychotic and have no idea what is actually wrong. I will never get those seven years back. That was my twenties. I lost most of my twenties to psychosis. They are gone now. I had a lot of horrible experiences that I would like to forget ever happened, because I was psychotic. I will never be able to actually forget those.

So, as you might imagine, I am very, very appreciative of the fact that I was finally told, in 2005, "you are psychotic". I had every right to know that. If somebody has cancer, or AIDS, or diabetes, or heart disease, and a doctor figures it out, they generally tell the person. If somebody has a mental illness, sometimes they don't. Perhaps they assume, like this therapist who spoke to my class today, that you will purposely go and acquire more symptoms of your disorder if you are told the name of your disorder. Perhaps they assume that you are too far gone to have any capacity for insight into the fact that you are psychotic, because they assume you are not intelligent enough to understand that you're psychotic while you still are psychotic. Which means they are wrong. I understand very well now, when I am experiencing psychosis. Understanding it doesn't mean it goes away, but it means, I take medications, and I go to my doctor and I say, "I am having negative and positive symptoms of psychosis right now, and I need my medication adjusted". And then he can adjust it. Which means I can live my life.

A couple weeks ago, a few minutes after I told my doctor about this experience sitting in a restaurant listening to people talking to me, when they were not actually talking to me at all, and sending them telepathic messages in response, which I know is a very abnormal thing to do, he said, "You seem to be hearing some things." Obviously, true! And thank you for respecting my intelligence enough to acknowledge this basic fact of my existence without assuming that I am too stupid to understand it!

So for any mental health professionals out there, please do not purposely hide the name of someone's disorder or disease from the person, because you could be taking away their ability to cope, manage their disorder or disease, and, thus, survive, by doing so. And that is a crime, in my opinion.

I am diagnosed with Schizoaffective Disorder, Bipolar Type.

And here is some information from this website:

DSM-IV Criteria for Schizoaffective Disorder

Diagnostic Criteria

An uninterrupted period of illness during which, at some time, there is either (1) a Major Depressive Episode, (2) a Manic Episode, or (3) a Mixed Episode concurrent with symptoms that meet (4) Criterion A for Schizophrenia.

Note: The Major Depressive Episode must include depressed mood.

(1) Criteria for Major Depressive Episode

Five (or more) of the following symptoms have been present during the same 2-week period and represent a change from previous functioning; at least one of the symptoms is either (1) depressed mood or (2) loss of interest or pleasure.

Note: Do not include symptoms that are clearly due to a general medical condition, or mood-incongruent delusions or hallucinations.

depressed mood most of the day, nearly every day, as indicated by either subjective report (e.g., feels sad or empty) or observation made by others (e.g., appears tearful). Note: In children and adolescents, can be irritable mood.

markedly diminished interest or pleasure in all, or almost all, activities most of the day, nearly every day (as indicated by either subjective account or observation made by others)

significant weight loss when not dieting or weight gain (e.g., a change of more than 5% of body weight in a month), or decrease or increase in appetite nearly every day. Note: In children, consider failure to make expected weight gains.

insomnia or hypersomnia nearly every day

psychomotor agitation or retardation nearly every day (observable by others, not merely subjective feelings of restlessness or being slowed down)

fatigue or loss of energy nearly every day

feelings of worthlessness or excessive or inappropriate guilt (which may be delusional) nearly every day (not merely self-reproach or guilt about being sick)

diminished ability to think or concentrate, or indecisiveness, nearly every day (either by subjective account or as observed by others)

recurrent thoughts of death (not just fear of dying), recurrent suicidal ideation without a specific plan, or a suicide attempt or a specific plan for committing suicide

The symptoms do not meet criteria for a Mixed Episode

The symptoms cause clinically significant distress or impairment in social, occupational, or other important areas of functioning.

The symptoms are not due to the direct physiological effects of a substance (e.g., a drug of abuse, a medication) or a general medical condition (e.g., hypothyroidism).

The symptoms are not better accounted for by Bereavement, i.e., after the loss of a loved one, the symptoms persist for longer than 2 months or are characterized by marked functional impairment, morbid preoccupation with worthlessness, suicidal ideation, psychotic symptoms, or psychomotor retardation.

(2) Criteria for Manic Episode

A distinct period of abnormally and persistently elevated, expansive, or irritable mood, lasting at least 1 week (or any duration if hospitalization is necessary).

During the period of mood disturbance, three (or more) of the following symptoms have persisted (four if the mood is only irritable) and have been present to a significant degree:

inflated self-esteem or grandiosity

decreased need for sleep (e.g., feels rested after only 3 hours of sleep)

more talkative than usual or pressure to keep talking

flight of ideas or subjective experience that thoughts are racing

distractibility (i.e., attention too easily drawn to unimportant or irrelevant external stimuli)

increase in goal-directed activity (either socially, at work or school, or sexually) or psychomotor agitation

excessive involvement in pleasurable activities that have a high potential for painful consequences (e.g., engaging in unrestrained buying sprees, sexual indiscretions, or foolish business investments)

The symptoms do not meet criteria for a Mixed Episode

The mood disturbance is sufficiently severe to cause marked impairment in occupational functioning or in usual social activities or relationships with others, or to necessitate hospitalization to prevent harm to self or others, or there are psychotic features.

The symptoms are not due to the direct physiological effects of a substance (e.g., a drug of abuse, a medication, or other treatment) or a general medical condition (e.g., hyperthyroidism).

(3) Criteria for Mixed Episode

The criteria are met both for a Manic Episode and for a Major Depressive Episode (except for duration) nearly every day during at least a 1-week period.

The mood disturbance is sufficiently severe to cause marked impairment in occupational functioning or in usual social activities or relationships with others, or to necessitate hospitalization to prevent harm to self or others, or there are psychotic features.

The symptoms are not due to the direct physiological effects of a substance (e.g., a drug of abuse, a medication, or other treatment) or a general medical condition (e.g., hyperthyroidism).

(4) Criterion A of Schizophrenia

Two (or more) of the following, each present for a significant portion of time during a 1-month period (or less if successfully treated):



disorganized speech (e.g., frequent derailment or incoherence)

grossly disorganized or catatonic behavior

negative symptoms, i.e., affective flattening, alogia, or avolition

Only one symptom is required if delusions are bizarre or hallucinations consist of a voice keeping up a running commentary on the person's behavior or thoughts, or two or more voices conversing with each other.

During the same period of illness, there have been delusions or hallucinations for at least 2 weeks in the absence of prominent mood symptoms.

Symptoms that meet criteria for a mood episode are present for a substantial portion of the total duration of the active and residual periods of the illness.

The disturbance is not due to the direct physiological effects of a substance (e.g., a drug of abuse, a medication) or a general medical condition.

Specify type:

Bipolar Type: if the disturbance includes a Manic or a Mixed Episode (or a Manic or a Mixed Episode and Major Depressive Episodes)

Depressive Type: if the disturbance only includes Major Depressive Episodes


  1. Lord, what ignorance. Like having a mental illness makes you incapable of controlling any of your actions.

    I was told I had BPD straight up, and you're right that's when knowledge is power. I learned what symptoms I could expect and actually *Be prepared* to handle them. Instead of not knowing what in the world was going on inside my head. Which is the least powerful feeling in the world.

    And you're right. Lil kicks BPD ass.

  2. Yes, you are one of the blogs I've read by someone with BPD that I was mentioning! I agree: how can you KNOW what the heck you're dealing with if nobody TELLS you?? Hello??? Stupid ignorance, is right. I was only told I had BPD once in a hospital buy a doctor who met me for all of three minutes, and knew nothing about me at all, so I know he was wrong, because nobody who has ever gotten to know me has ever agreed with that guy. But, hey, at least that guy said it to my face!

    It's hard enough to even get an *accurate diagnosis* of any kind, and then to actually get one and NOT be told you HAVE it - well that is one of the most ridiculous things I have ever heard.

    I agree: Lil kicks ass.

  3. Hi Jen,

    That is the most ignorant thing I have ever heard anyone say. To NOT tell someone what they have? I believe that is actually cruel!

    I had a doctor decide I had BPD when I was clearly bipolar. He didn't KNOW me. My therapist and psychiatrist now have been seeing me for several years and know me well and say there's no way I have BPD, because I asked them. They said I have clear bipolar symptoms.

    Sheesh, the ignorance. I am so surprised the professor did not disagree with her. Maybe you should go to the head of the department and ask them about this? This is not what they should be teaching in college. It's alarming that anyone would suggest someone not be told if there is a diagnosis and that the diagnosis then be deliberately withheld. I am just shocked beyond belief.


  4. I can so attest to what you are saying. I walked around for years being told I was bipolar. I thought I was fooling them into excuing my bad behavior. I didn't believe there was anything wrong with me other then I was a terrible, amoral, weak person. I was constantly suicidal. When I was told that it was Schizo-affective, it totally resinated with me. Suddenly I could forgive myself. Suddenly I thought, "Wow that sounds serious. Maybe this isn't all my fault." Suddenly it wasn't because I was a bad person and like a light switch I was no longer suicidal. It was suddenly okay that I was accomplishing what my sisters were. Knowing was life changing. Then I found out that this diagnosis had been on my chart for 4 years before anyone decided to tell me and that person mentioned it because he thought I already knew.

  5. Thank you for the kudos Jen! I'm thrilled you see me as a fighter cos it's what I aim for. And you are SO right in this post, for me having a diagnosis meant I was technically "ill" instead of just weird or lazy or freaking out. And like Liz says it gave me some guidelines of what to expect from BPD and how to fight back. I can't stand some so-called professional attitudes! Most of the people I've met in the mentally ill community agree that a timely and accurate diagnosis is important. After all if we had a broken bone wouldn't it be vital to know WHICH bone and how badly? Anyway thank you for another great post my friend xx

  6. This actually happened to me. I was given a bpd diagnosis but no one told me. I suspected they thought I was bpd because of the things they were saying to me but when I specifically asked about my diagnosis it was deliberately withheld from me. It made me feel even crazier and certainly made me distrust mental health services.

    It's basically a lack of respect for the person diagnosed, and a perpetuation of much of the stigma that surrounds bpd. How sad that such attitudes are actually being *taught*.

  7. Brilliant post. I'm so sick of people demonising diagnoses as "labels" or "pathologised humanity" or whatever one of a number of semantic distinctions people wish to make. I completely agree that life's in a name. Whilst I'm happy to accept that there's plenty of spectra and over-lapping amongst mental health conditions, names for the illnesses are useful in terms of treatment, connecting with others in similar boat and with realising that debilitating symptoms are just that - symptoms, not flaws.

    As someone who was diagnosed, and has now more or less fully recovered from BPD, I find the assumptions and fallacies despicable - but, sadly, I'm not surprised by them any more. The problem is that an awareness drive about the condition needs to educate the actual professionals as well as laypeople and the general public! *sigh*

    Anyway, thanks for this post :)

    Take care

    Pan x

  8. Chelle, I was surprised by it too. I didn't complain to anyone about it, but I am mentioning it to my professor and letting her know that I disagreed with what this speaker said, and why.

    Janae, I understand exactly what you mean. Sometimes a name explains things, and let's you know that there is a reason why these things are happening within your brain, so a name can actually be important to have.

    Lil, I always have loved your blog! Of course when I think of someone with BPD, you come to mind as a strong person.

    Pandora, I agree! I think there is a difference between a "label" and a name for something. I mean, of course no one wants to be labeled with things, but when you have a medical disorder or disease, and there is a name for it, I do not see how it is damaging to know what the name of it is, and that it exists.


I welcome comments from all readers and encourage you to leave them! Please do. However, due to spam, I review each comment before it can be posted, so it may take 24-48 hours before your comment appears on the blog. Please be patient. I post comments that are not spam.Note: my definition of "spam" includes ALL links to sites claiming to cure or provide "the solution" for incurable diseases such as Schizoaffective Disorder and Schizophrenia. Vulnerable people come to my blog, and I will not let them be preyed upon, but people who post snake oil remedies on the internets. Take your garbage and peddle it elsewhere. Since Blogger doesn't weed all that garbage out, I've been doing it myself for years.